Interagency Task Force on Advancing Treatments for Rare Diseases

Part A of title III of the Public Health Service Act (42 U.S.C. 241 et seq.) is amended by adding at the end the following: 310C. Interagency Task Force on Advancing Treatments for Rare Diseases (a) In general The Secretary shall maintain a permanent task force, to be known as the Interagency Task Force on Advancing Treatments for Rare Diseases (in this section referred to as the Task Force). The Secretary shall establish the Task Force not later than 90 days after the date of enactment of the legislation. (b) Composition The Task Force shall be composed of the following members: (1) The Secretary. (2) The Administrator of the Centers for Medicare & Medicaid Services. (3) The Commissioner of Food and Drugs. (4) The Director of the National Institutes of Health. (5) The Director of the Centers for Disease Control and Prevention. (6) Four individuals, to be appointed by the Secretary, who are— (A) biopharmaceutical innovators with respect to rare diseases and conditions; (B) private health plan administrators; or (C) representatives of institutions or organizations conducting federally funded research with respect to rare diseases and conditions. (7) Four individuals, to be appointed by the Secretary, who are representatives of rare disease advocacy groups. (c) Duties The Task Force shall— (1) assess— (A) Federal agency activities concerning rare diseases, including projects involving two or more agencies; (B) overall programmatic funding; and (C) potential measurable outcomes to include in future reports; and (2) coordinate the efforts of the Department of Health and Human Services to incentivize research on, and development of, products for prevention, diagnosis, and treatment with respect to rare diseases and conditions, particularly rare diseases and conditions that disproportionately impact women..